Saturday, October 24, 2009

Olivia at the Fall Festival



We bought the vampire teeth right before we went and they are clearly made for an adult. They are soft rubber and I will be trimming them down before Halloween.







Olivia with her friend Domenick




Trunk or Treat



Waiting to go into the haunted classroom.







I love it when I don't have to squeek to get the grease

Well, Stephen came home early on Wednesday because he threw up at school. It was totally random. He was just sitting there and then he ran to the bathroom. The fact that he knew to go to the bathroom is a plus. He hasn't thrown up much in his life, thank God, and when he has it has usually been with a seizure. We have only been able to get him to the bathroom a couple times before he has thrown up. He was fine right after and no signs that it was seizure related. I kept him home on Thursday just to be on the safe side.

I got a call on Thursday from my daughter's school principal, she is also part of Stephen's AT team because she used to be the PT and has training to do this type of evaluation, and she said that they would be bringing some devices to the school on Friday. Well, I talked to the teacher on Friday and she said they had postponed it until Monday. Hopefully, this is not the start of more delay tactics. I asked the principal if he was going to be able to bring the device home and she said yes. I also asked whether or not we would be able to get one through our insurance that we would own once they found one that worked for him and she said yes. All good so far. Now, I am hoping that he will take to something and be able to use it to communicate. Prayers and finger crossing are welcome : )

I have found many many times in my life that when I am trying really hard to make something happen and it isn't that I need to let go and let God. And sure enough things come to me and my family that we need. I have learned to get up everyday and go with the flow. Yes, I plan ahead for as much as I can but I remain open to things not going as planned and accepting it because I always find out later that it was for a good reason. Does this happen to any of you? It has made my life so much less stressful and strengthened my faith that God is out there and knows what we need better than we do and is always guiding us down the path we should be on. Even the "negative" times in my life happened for a reason, to teach me something I needed to learn or make me appreciate the good times more when I have them.

Monday, October 19, 2009

Don't believe the hype! My universal healthcare crusade

I just watched "Sicko"twice this week. The first time I watched it by myself and cried harder than I have cried in a long time. If you have a heart in your chest that is beating you can't help but be disturbed by the content of this movie and how it exposes the health insurance companies as nothing more than corporations out to make as much money as possible while injuring, making sicker and killing people in the name of profit. I have become obsessed with researching this issue. What I am finding is making me want to shout from the hill tops that others need to stop believing all the lies and propaganda about how universal healthcare would be worse than the system we have now.

Do you realize our country is ranked 37 in the world for healthcare quality!!!!???

We spend the most per person on healthcare and we are the only industrialized nation without universal healthcare! If it is such a horrible system than why are we the only ones without it!?

Why should you pay for other's care? Because it is the right thing to do! I believe we are judged as a society by how we treat the least among us. I also believe healthcare is a RIGHT. I have actually had people who identify as Christian say to me,"Why should I have to pay to take care of other people?" Hello! Hyprocitical!

Plus, we already have free services that are paid for with our taxes and private contributions-free library, free police and fire service, free mail delivery and free public education. I guess if you are so against free healthcare for all because you are going to have to pay for other people to access it than you are probably willing to get rid of these free services and institutions as well. Yeah, right. I don't see that happening.

If everyone got more preventative care and sought help for minor ailments before they became seriously ill it would save money on healthcare and we would be a much more productive and happier country.

Even people WITH health insurance are allowed to become sicker or even die because they are being denied care for things as serious as cancer treatment and life saving surgery so the insurance company can make a boat load of money. Isn't health insurance there to help you when you are sick or injured? Can you imagine being forced into bankruptcy or foreclosure because you are trying to pay medical bills not covered by your insurance? Can you imagine watching a loved one die because the insurance company is refusing the treatment their doctor is recommending they receive to save their life!!??

I have been researching and talking my hubbies ear off about it since my first viewing. All of my research has convinced me further that we need universal healthcare now!

I watched it a second time with my hubby. Now he understands my motivation and obsession with this topic. My hubby is not as easily upset and driven to action as I am and after seeing "Sicko" and listening to the other info I have gathered, he is on a mission to talk to anyone who will listen about this issue.

Our family is poor enough that we have free health insurance funded by the state. As any avid follower of this blog knows we have 2 kids on medication and they both have visits to specialists frequently and have had a lot of dental problems. My children would be very sick and we would become homeless trying to pay meds and for insurance through my husband's employer. My husband works for a very small company and that is why the health insurance is so expensive. I don't know what we will do when one day we make a penny over the cutoff for income and have to start paying for health insurance and co pays and deductibles...it makes my heart and head hurt just thinking about it.

Have any of you had problems with being denied care by your insurance company or God forbid, known someone who died as a result of a denial of care?

Do any of you not have health insurance and if so how has this impacted your life and the decisions you make in seeking treatment or not paying bills so you can afford medicine?

The squeeky wheel is demanding the grease

So, I'm sick of making phone calls to the Special Education director in my school district about where the imaginary evaluation report is that was done for my son to get a communication device! No more Mrs. Nice Gal!! I have had it with the phone tag! It's time to start writing letters and documenting the intentional delay.

I tried calling my son's pediatrician for a referral to someone to do an AT eval outside of the school. This guy turned out to be a dead end and was so negative about the subject that I regret talking to him at all. Buddy, it's time to find a new job when all you can do for a desperate parent who is just trying to find a way to make her son's life better is to try and talk her out of pursuing it!

Outside of starting a paper trail and possibly filing a complaint with the DOE we are exploring cheaper and more accessible alternates to the traditional AT devices. My wonderful friend Jenn gave us a kids' speaking dictionary that was her son's that he no longer uses. Peeps, it is a $60 toy that has a voice output!! It is a Franklin Speaking Dictionary and can only be found online. You can type in a word or sentence and hit speak and it talks for you!! The words it has is pretty limited so we are looking at the Collegiate version which is about $100 new on ebay or cheaper if you buy it used. I will definitely let you know if the Collegiate version is worth purchasing once we get it and try using it with Stephen.

Even if we get him a more expensive AT device I worry about how difficult it would be to replace if it broke. At least if we can have him use one of these speaking dictionaries and it craps out it is much more affordable to replace!

Stephen is doing great and I think some of it is because he is using his trampoline A LOT now that it is in his room. We have it right next to his computer and he will listen to whatever he is doing on the computer with his headphones and jump on the trampoline at the same time. His legs are getting quite buff! He has broken his addiction to the Internet and is now into watching movies on his computer and likes to turn on the subtitle feature which I think will help with him learning how to type his needs and wants on a communication device.

**UPDATE**

His wonderful teacher just called me and said that she spoke with the OT and the vice principal in our district that were part of the team that did his AT eval and they are supposed to have something in writing to her by the end of the week!! They are also recommending a voice output device....hopefully not something archaic. I am optimistic but not holding my breath. I will hold off on my letter writing blitz for now....but if they don't follow through by the end of the week, look out!!

Olivia's MRI results looked fine according to her Neuro so we will just follow up with her in six months : ) She has been doing great in school and not had any more issues with the teacher since our little drama at the beginning of the school year. Yay!!

I cut of all my hair. I love it! One less thing to deal with and worry about : )

Monday, October 5, 2009

Alive and kicking!

We are all still here! I know I have been MIA for a while. Lots of good things to report!



My dad and stepmother Cecile visited from Maine. We hadn't seen them in years and it was a great visit!

Pat went to the NASCAR race in NH and had a blast! I got him a pit pass and he was in heaven being so close to all the equipment and hung out at Jeff Burton's pit box.


He gave a picture that Olivia drew of her favorite driver's car, Jeff Gordon, to his pit crew and they put it in his pit box.





Olivia made it through about 45 minutes of her MRI before she started crying and getting really upset. Pat took her to the appointment because they were going to the ginormous fair that is a big deal in this area every year. No big surprise, she was a daredevil and went on rides that would make an adult wet their pants!


































We are supposed to get a call from her Neuro this week with the results of what they were able to scan. We know the cervical scan was normal. Depending on how much they were able to scan and the results she may or may not need to do another scan under sedation.
Stephen has been doing great and not had any seizures since we increased his meds. I spoke with the Neuro and she said that it sounds like he had a complex partial seizure which is a relief.
We got his state testing results from last year and he is progressing and got all 3's and 4's (4 and 5 are the highest in different categories). Go Stephen!!
He started working in the school library which is going very well and he gets to take home a library book everyday. Of course, he has always picks a Mother Goose book ; )
I am back from my mental vacation and have been very productive. I finally started listing all the kids outgrown clothes on ebay. We dismantled the sensory room because Stephen wasn't using it and turned it into my office/craft room. We packed everything else away, except the tote of sensory toys which is in his room, in case he seems interested in those things again. We switched bedrooms with Stephen. We didn't need all the space in our room and now that he has our room there is room for the trampoline which he is using now that it is in his bedroom.
I think that it was really important to listen to my mind and body and take a break and be lazy when I felt like it. I think we all get overwhelmed and exhausted mentally as parents, especially when we have kids with multiple issues. As long as it doesn't turn into a downward spiral which I think can happen for some people. I know myself and I know that I have a week here or there where I've just had too much on my plate and it's time to take a break.
Do any of you have those "mental vacations" where you just want to lay around in your jammies all day and watch tv or play on the computer?